Powerless

I’ve been struggling lately.  There has been a series of disturbing events happening in my life.  First, we had a terrifying wandering incident with one of our children – something I never thought would happen to us, in spite of all the statistics about how many autistic children wander.  Then there was a tragic shooting in my area and the victims were old friends of mine.  Then a close friend lost her son to an unexpected drug overdose.  I have also been watching a loved one struggling with alcoholism.  I’ve felt so incredibly powerless through all of this.  Things are just HAPPENING all around me and I have no control over any of it.  No way to help the people who are hurting.  I’ve felt like my hands are just tied.

This morning, while driving Juliette to therapy, I was heading down a busy street and witnessed a domestic altercation between a man and a woman.  He was BEATING her, in their driveway, in broad daylight at 8:00 in the morning.  I watched as the tall, brawny man pushed the petite woman so hard that she flew across the driveway and lost her footing.  I locked eyes with her.  She was terrified.  Her eyes were pleading me to help.

I called the police.  I had to circle back down the street in order to give them the house number.  I saw the woman, still in the driveway, digging around in the trunk of her vehicle, and the man nowhere to be seen.  I turned around again, and headed toward Juliette’s therapy center, my shaky hands gripping the steering wheel.  Juliette asked me why I had called the police, and I turned it into a teaching moment, telling her that police officers are “helpers” and they would send someone to make sure the woman was ok.  Luckily, she had not actually seen the physical fighting and assumed the people were just arguing, so my stammered explanation seemed to suffice.

I brought her to school.  It was field trip day, so she was extremely excited.  I was still kind of in shock due to what I had just witnessed.  I drove back toward my home, and when I went past that house again, there were two police cars parked out front.  Thank goodness!

A few minutes later, a police officer called me and asked me to recount precisely what had happened so they could make an official report.  They said that the woman’s story coincided with what I was reporting, but the man had a different version of the story.  My only question was, “is she ok?”  He said she was.

At this point in my life, I don’t know if I believe in God, and I don’t believe in fate, but I do find that things tend to happen for a reason.  Why was I the one to bring Juliette to school that day?  Usually it is always Jacob, and had it been him, they would have been on the road much earlier (since he is never late like I am), and he likely would not have seen what I saw.  So why did everything fall into place in precisely the correct manner for me to witness this?

So I could feel like I have worth.  So I could realize that I can make some small difference, to someone, anyone.  I am not powerless over everything in life.

I am powerful.

I CAN help.

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What do you picture when you think of an autistic child? You’re wrong.

What do you imagine when you picture a child with autism?

I can tell you what I imagined.

A child who is antisocial.  A child who refuses to make eye contact.  A child who is withdrawn, sullen, disconnected, unaffectionate, devoid of empathy.

Which was why my first reaction when that word was brought up in relation to my daughter was to scoff.  Autism?  Juliette?  Really?!

But she’s….so social!

And she is.  From the moment she was born, that girl has radiated sunshine.  People used to comment everywhere we went that she was just so happy.  She was always smiling.  She loved people.  Not only was her personality bright, but so was her mind.  She was inquisitive.  She was magnetic.  Well, she was just plain brilliant, in so many ways.

She was NOTHING like that image I had in my head of an autistic child.

Most people, before they have a loved one with autism, have that same image of the withdrawn autistic child in their minds.  Sadly, many health professionals do as well.  That image is the biggest roadblock getting in the way of autistic children gaining the proper diagnosis and support.  I can’t even tell you how many times I have heard parents recounting stories of how they went to their doctor, concerned about their child’s development, only to be waved away and told their child couldn’t possibly have autism because he/she “made eye contact” or appears to be “too social.”  Some parents are satisfied with that response, and the child continues to struggle through life without help.  Some parents continue to fight for YEARS before finally getting their child diagnosed and accessing supports and resources.   We were very lucky that we found a wonderful psychologist who easily diagnosed Juliette, then Lennon, and then myself.  All of us make eye contact and are quote-unquote “social,” by the way.  Not one of us looks anything like that image you’ve got in your head.

Look.  That image….it simply doesn’t exist in real life.  That autistic kid who is completely in his own world, refusing to look anyone in the eyes under any circumstances…..doesn’t exist.  At least, I’ve never met him.  And I’ve met my fair share of autistic children, on both ends of the spectrum.  Beautiful, bright, curious, magnetic, sensitive, funny, and gosh-darn adorable autistic kids who are literally the direct opposite of what I had imagined.  They are completely “normal” looking children who are so full of life, only their brains are just wired a bit differently.

When my son, Lennon was a baby, I knew he was different right away.  He was the most wide awake, alert newborn I had ever seen.  He cried a lot, and he almost never slept.  He seemed unable to shut his brain off.  His eyes were always wide open, taking everything in.  He hit all his developmental milestones early, especially speaking.  He talked like a miniature adult, and he was so incredibly intelligent.  He was a challenging child in many ways.  He was very strong-willed.  He knew what he wanted, and he did not respond well to being told “no.”  When he set a goal, he would never give up.  He had traits that we admire in adults, but are challenging to deal with in children.

Somewhere along the way, in my obsessive searching for answers as to why my child was so different, I came across the terms “high needs child” and “spirited child.”  He is both of those things, but it would be six years before I would realize that he is also a child who has Asperger’s.  When he was a toddler, I got the book “Raising Your Spirited Child,” and the author describes spirited children as being “MORE.”  More intense, sensitive, perceptive, persistent, and energetic than a typical child.  What a perfect description!  While the book isn’t about autistic children directly, many children on the spectrum would definitely fall into the category of spirited as well.  Lennon is, and always has been, more.  He may be small in stature, but he is larger than life in personality.

Let’s go back to the image of the autistic child in your head.  Picture him.  Do you think of that child as being MORE?  Or LESS?

I am telling you….forget about that image, because that child doesn’t exist.

Also, forget about the eye contact thing.  It should be taken out of the equation, as far as I’m concerned.  Yes, some people with autism struggle with direct eye contact (usually more often in unfamiliar situations with unfamiliar people.  Most find eye contact easier at home, with their families).  However, it is just one of MANY factors to be considered when diagnosing a child.  A child can have flawless eye contact and still be very much autistic.   And yet, somehow, we have chosen to latch onto this one small trait as THE definitive trait of autism.  If a child makes brief eye contact at a doctor’s appointment, they are immediately dismissed from the spectrum?  C’mon, people, we can do better than this.  We are failing our children because we can’t get over that stereotypical image of the sullen, autistic child with the downcast eyes; the child who is somehow “less” than other children.  We imagine that they are less social, less connected, less emotional, less intelligent, and less empathetic.  We need to consider that we may have this all backward.  These are kids who experience everything more intensely: sensory information, emotions, empathy.  Their nervous systems are more fragile, and they are much more easily overwhelmed.  Because they are MORE, they have more needs and require more support.

Most importantly, they are human beings.  They are individuals.  Generalizing all autistic people as antisocial is doing them a big disservice.  There are introverted and extroverted autistic people.  There is as much variation among autistic people as there is among neurotypical people.  I see this firsthand with my children.  Lennon and Juliette are both diagnosed with autism, yet they are so different from each other.  They each have their own unique strengths and challenges.  Lennon has impressive verbal skills, and he is very driven to achieve his goals, but he sometimes has trouble going with the flow.  Juliette struggles more with communication, but she is more adaptable to change and more conventionally “social.”  Again, neither of them is anything like what I imagined an autistic child would be like.  That was the hardest thing for me to wrap my head around when Juliette was diagnosed.  She just didn’t SEEM autistic to me.

But then I realized, I had been wrong all along about what autism looks like.  I’ve learned to replace the incorrect image in my head with images like this, of my beautiful, creative, smart, kind, loving, and MORE children.

 

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